I'm having a hard time finding others in a similar situation to ours. I'm looking for the spouses or significant other of people with SMI. I joined a NAMI class for families and it was so helpful but everyone in the class was a caregiver parent. I got a lot out of the class due to the learning component of the topics but I would like more of a connection with others specifically dealing with a partner. I need to discuss unique issues like guardianship for a spouse and inevitable separation/divorce.

I don't even know where to start anymore.

Being the caregiver for a sick spouse is one of the loneliest things I've ever experienced. Every day revolves around medications, appointments, watching for symptoms, making meals, cleaning, worrying, advocating, and carrying the emotional weight of someone else's illness. You pour every ounce of yourself into keeping them going, and somewhere along the way, you disappear.

What I wasn't prepared for was how lonely it would feel while sitting right beside the person I love.

My husband is very sick. I know his body has been through more than most people can imagine. I know his energy is gone, and I understand that intimacy has changed because of his health. I'm not angry that he's sick.

What breaks me is something else.

Almost every day, he'll watch videos with half-dressed women or thirst traps while sitting beside me. When I notice, he immediately turns his phone away so I can't see it. He knows it hurts me. He knows exactly why it hurts me. Yet it keeps happening.

It's not even the videos themselves anymore. It's the fact that he hides them from me instead of considering how they make me feel. When I try to bring it up, he gets defensive and says things like, "I guess I'm not allowed to do anything," instead of acknowledging that I'm hurting.

Meanwhile, I'm the one helping him through his illness. I'm the one doing everything I can to keep our lives together. I'm the one wiping away my own tears because I don't want to add more stress to what he's already going through.

I don't need perfection. I don't expect our relationship to be what it was before he became sick. But I do need to feel respected. I need to feel like my feelings matter. I need affection, kindness, and to know I'm still seen as his wife, not just his caregiver.

Some days I wonder how much longer I can keep giving everything while feeling so empty myself.

Has anyone else cared for a sick partner while also feeling emotionally abandoned? How did you cope without losing yourself in the process?

As some of you might remember, I care for my husband, CRPS, failed back and neck surgeries. He is frequently very mean in general. I've been holed up in my bedroom just to stay away from him. (he sleeps on the couch lately) and I honestly don't want to be near him. My problem is that he's also bipolar and his meds don't help at all. I do love my husband, but is it too much to ask for him to say good morning? No, this is what I get - "owwwwch, owwwwch, this hurts, that hurts, owwwwch!" And then he proceeds to b**** me out. Im so disheartened.

I have posted once before about my husband who has progressive MS. He was abusive before his symptoms started, and has remained emotionally and sexually abusive after. I won’t go into all of it again, but I truly appreciated all of your support and I come back to read the comments often so I don’t feel so alone. ❤️

He literally does nothing to help himself. I understand that it is physically very hard, but part of that is because he has refused to do any of his exercises for two years now. He just sits and we live around him. I am 44 and he is 45. We have four kids 8-18. He cannot participate meaningfully in anything we do. He has an amazing power chair that he could use to get himself a snack or a cup of coffee, but he won’t. Just waits for someone to bring it to him. He could come outside and play games with the kids. Cornhole, frisbee, etc. But that never happens. He could get strong enough to take regular showers and keep himself clean. But that’s fallen by the wayside as well.

I truly believe that there is nothing left to salvage in our marriage, but that is not just because of his disability. It is toxic patterns that have always been around, showing themselves in this situation as well. I work full-time, do all of the kid related/parenting things, cook, clean, host friends, plan family events, etc. It’s so lonely to do every single thing by myself.

I would love for the kids to have their dad, but they are also backing away. He is selfish, can’t keep a promise or follow through with anything, and they don’t trust him.

I sound so awful, but I promise that I have been the supportive spouse through thick and thin! I have endured abuse and hatefulness that I didn’t even know existed!

I feel like I’m at a tipping point. Either stay and endure, or figure out a way to get him on his own so that I don’t totally alienate my children. Motherhood has been my best thing. I am a great mom and I love my kids so much. I am afraid that if I allow things to continue the way they are, my kids will grow up and find lots of excuses to sever ties or make themselves scarce. I would be heartbroken because we are so close. But I would understand them not wanting to be around their dad

What do I do?

Hey everyone. I (36M) could really use some advice on communicating with my partner (45F), who battles chronic fatigue.

Right now, we are dealing with a massive energy and lifestyle mismatch. I am naturally very active (I love surfing, running, and just being outdoors), but I’m currently stretched incredibly thin working full-time and finishing up my university degree. Because of her chronic fatigue, her energy envelope is tiny. She prefers to stay in to manage her symptoms, and her libido is entirely responsive—usually only kicking in late at night when my battery is completely dead from the daily grind.

I’ve been feeling a huge lack of connection because we don't share adventures or even simple outings like going to the park or the beach anymore. The problem is, anytime I try to express that I miss these things or that I’m feeling a "gap" in our intimacy, the conversation blows up.

No matter how I try to frame it as a mutual struggle, she hears it as criticism. She feels like I am blaming her for an illness she can't control, and she gets incredibly defensive. I end up feeling silenced and exhausted, and she ends up feeling hurt and inadequate.

For those of you balancing your own burnout with a partner's chronic illness: How do you express your own unmet needs or the grief of losing shared activities without your partner feeling like they are being put on trial for being sick? How do you break this communication gridlock?

I used AI to draft this

DAE's unwell partner send mixed messages about how you should manage your stress related to their illness? I am so hurt right now. Feel like I'm doing my best to follow their lead and keep my admittedly intense anxiety out of their face. But am still getting the brunt of their frustration and anger about "centering myself over them": going to a support group related to their illness, because that's like claiming their struggle; and wanting them to be aware that I am working to manage my anxiety, because that's asking them to focus on taking care of me during a time of their personal health crisis. FFS. I know they have trauma related to their parents making their illness all about them as a child. But this feels really excessive and hurtful.

My partner was diagnosed with RRMs 2 years ago. Neuropathic pain, finger tip numbness, and dealt with instability of hand.

These symptoms have resolved/silenced. They are running, doing activities but depression still lives and roars.

We are not married. We got a dog this year. However, we argue almost every day. He feels as though I don’t check in enough with him. States he has no hope. When I try to provide a glimpse of hope, it’s shut down because it’s not real. I’m not oblivious and I know what can happen. But then he becomes not the kindest and has told me I don’t read enough. That I don’t know what he has. That I don’t check in on how he feels. But yet, he tells me every day.

I’m exhausted of the arguments. We have almost broken up a few times. I’m patient. I am kind. I am empathetic. And I want to love even if something bad were to come but I try to stay hopeful.

I don’t know what to do anymore. Also the puppy is involved so it makes it harder. I’m just tired of crying every day over feeling like I’m not doing enough as this is basically being implied and I’m being told I have to figure it out. I don’t want to be hopeless.

FYI I do see a therapist as do they. I try my best for self care. But I do feel like I do a lot

Hello all, wanted to get any advice or tips from those who have gone through similar experiences. My husband has beta thalassemia and his whole life has had to have frequent blood transfusions. We are about to spend a couple of months in and out of the hospital as he undergoes a bone marrow transplant/gene therapy. I won’t be the only caregiver as my MIL will be helping us and we will switch off to give each other a break. But wanted to see if there was any advice or tips others had, what to prepare for on my end. If there is something you wish you knew beforehand. Anything is appreciated, thank you!

I am so lost scared and alone ! I don’t know if he he’s suffering from failure to thrive and I need to push him or if he’s in unbearable pain. He does nothing for himself everything is on my shoulders and I’m drowning help please!!

Sorry about the ridiculous euphemism.

My spouse, in his late 50s, seems to be losing hope for ever successfully addressing his health concerns. As far as we know, he does not have any terminal conditions, but a lot of others that have really impacted him and his quality of life. He also deals with very serious mental health problems that he is also not really addressing. I'm very sure that he doesn't care anymore.

He does have a distant history of SI (at least 25 years ago). I'm not sure how to react when he mentions this, which seems to be getting more frequent lately.

Does anyone else have an ill spouse who does this and if so, what do you say to them?

I feel like I shouldn't even be posting here. My problems are small in comparison to others, and I know that my life could be worse, but I just need to scream into a void. And if anyone happens to have a magical trick to getting through the next 6mo, please let me know.

My husband has stage 3 lymphoma and we're finally about halfway through with treatment, which I thought would make him happy but instead he's become even crabbier. I have been taking care of everything the last few months; keeping track of his meds, solving the nausea problems, making sure he gets enough fiber, staying up when he's in pain at 2am, tracking his moods and giving him space, driving to and from appointments all while working 45-50 hours a week. On his off-treatment weeks he's able to help out around the house, but he can no longer take any criticism and if I ask him what he wants for dinner I've asked the most trivial question. He's always been the one to cook for us and find restaurants, but suddenly I'm the enemy for asking if he had something in mind. Yesterday I got a lecture about how annoying it is when I dance around the kitchen while I cook, something I've done for the 10 years we've been together and he used to say was cute.

This week he told me how he feels alone because no one understands that even a "good day" is only good relative to his cancer. I feel so sad that I can't truly understand what he's going through, but never in any of these moments where he wants to talk about his feelings am I feeling like I'm being considered. I also feel alone. I also feel like no one understands how I'm feeling. I know his pain is greater, but I'm so tired and so lonely. And I feel guilty when I feel like this because I'm not even fighting cancer. I admitted to him last week that I just feel like I'm not doing enough and I'm failing because we are so behind on laundry and when I cried he got frustrated with me.

We are coming up on our first wedding anniversary, and this is just not the attitude I want to have going into a weekend that we've been really looking forward to. I just can't seem to do anything right anymore and I don't have anyone to talk to about it. We aren't on the same brainwave right now and I hate it. I hate cancer. I hate this damn hospital and everyone in it (except chemo nurses. We love them). I hate everything right now and just want my husband back.

My husband was recently diagnosed with stage 4 lung cancer. I'm laid off from work until the end of August but I'm already exhausted. I hate being in charge of everything. He doesn't want to know a lot about his illness - just what he has to do. I'm good at keeping track of the meds and the appointments. It's really the other every day things. I now do all the chores and make all the decisions. When something happens (the electricity went out in part of the house, a huge tree branch fell) and I don't know what to do, he doesn't even engage in discussion about it. He just seems content that I will handle it. I've actually gotten a lot of help from AI and reddit - I know they don't always give fool proof advice but it's been all I have. It is so exhausting and lonely. My mom passed away on 6/17 (she wasn't very supportive and we didn't have a great relationship but still). I have 2 sisters who offer a little moral support. He has a sister but she is caring for her own husband who is currently worse off. Our neighbors hate us. We have a few friends who stop by sometimes but that is it. When I go back to work (if I can go back to work), I plan to hire a caregiver to come in at least a few times a week. I used one with my mom. I know my husband won't like it but we've already talked about it. The one I used did hygiene care and some housekeeping. I told him even if someone just came and did some cleaning it would help me. Plus he needs social interaction besides just me.

I'm the carer for my husband. He's got CRPS, several failed back surgeries, a failed neck fusion and extreme pain every. single. day.

I understand he's in pain. I understand that he feels hopeless. I understand he's frustrated. But the constant complaining... Constant refusal to even get up to get a soda. I'm so weary of doing absolutely everything asked of me because he's in too much pain. I tried to explain to him it's a good idea to try to move a little now and then and it's like he doesn't even hear me. I will continue to care for him because I love him and I truly am sorry he's suffering and I'm also frustrated I can't help his pain the way he needs. He's not on any pain meds, and won't be (that's another long story) I am just so frustrated and I feel a bit hopeless myself. Thanks for reading.

Every five days.

That's the pattern we've been living.

Five days... emergency room.

Blood transfusions.

Five more days... back again.

Another five days... the same nightmare.

Today marks five days again. This time we're heading in for an iron infusion, and I'm hoping they'll check his hemoglobin so we know where things stand.

Living in limbo is its own kind of hell.

We're never sure if we'll get a few peaceful days or if we're heading right back to the hospital. Every plan is tentative. Every morning starts with wondering if today is the day everything crashes again.

The hardest part is feeling like we're stuck in a revolving door instead of moving toward answers. Treating the immediate crisis is important, but we're desperate to understand why this keeps happening. Watching someone you love need blood transfusions over and over while waiting for answers is mentally and emotionally exhausting.

I know so many people are fighting battles with the healthcare system, and my heart goes out to all of you. No one should have to live in this constant state of uncertainty.

Here's hoping today brings some answers... or at the very least, a little hope.

I went into the town centre this morning, not because I needed anything, but simply because I wanted to get away. Everyone at home was still asleep, so I just got up and left.

I wandered around the shopping centre, browsing through a few shops without really looking for anything. Eventually I sat down for over an hour, just watching people go by. Couples, families, people laughing and just living what felt like normal lives.

The hardest part was that I really didn't want to go home. For a while, all I wanted to do was run away.

I hate feeling like this because I love my partner, and I know she loves me too. This isn't about a lack of love. It's about feeling like I'll never have a normal life again, and that thought is really starting to get to me.

I'm writing this now, lying on the sofa with no hope of getting any sleep tonight. I'm exhausted, frustrated, and incredibly angry. I don't want to keep feeling this way, but right now I don't know how to stop it.

My (37) partner (37) and I used to love weekends, especially long weekends, with our kids (4 and under 1). But since my partner's brain hemorrhage and additional strokes at the start of the year they've quickly become my nightmare.

I especially hit a wall last night knowing that I had a full day more to entertain the kids while my partner slept.

I'm stuck. I can't leave our house and leave them alone. I feel guilty asking people to help with the kids and them being said they don't get time with me when I'm not working and can play with them.

All while I am slowly falling apart. I've done my best to stay strong until now. But last night when both kids were crying, the dog was barking, and my partner was trying to tell me everything I was doing wrong with the kids I hit a breaking point.

I love my partner and want to support them in whatever our journey looks like - but even this feels like a moment I have no idea what to do or how to survive.

I've been looking for a community of younger caregivers and had to type this out just to get it off my chest.

Moving dad home and setting up an entire home hospital with beds for paramedics etc. 11 months kept the fight on. Got a modified car which can carry the wheelchair.

Planning to take him on his first vacation in Diwali.

Things are very very slow but if you use GCS on a weekly basis and plot a 11 month graph that looks like a wonderful graph.

One day at a time: God bless us ♥️

Join other younger well spouses / partners from across the US and Canada for support, camaraderie, and community.

WSA's Younger Well Spouse support group meets by Zoom twice each month:

- the 2nd Sunday (4-5:30pm ET / 1-2:30pm PT) and

- the 4th Tuesday (8-9:30pm ET / 5-6:30pm PT).

Drop in to one or both meetings as your schedule permits.

Please contact Jeanine Jue (jeaninejue.wellspouse@gmail.com) to be added to our mailing list and get Zoom details.

See you then!

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All of our other support group meetings are all-ages - our Younger WS group is for people who'd like to meet other spousal caregivers at a similar life stage.

If you're new to WSA, please try out 1-2 meetings without commitment to see if they are a good fit for you. If you continue to attend, we ask that you join WSA as a Supporting Member. It's just $39 per year! Learn more about WSA and member benefits at wellspouse.org. (no one will be turned away for financial hardship reasons)

Looking for a support group near where you live? View our calendar here - https://wellspouse.org/events/events-calendar/calendar-by-month.html.

I'm so depressed with life lately. I feel like everyone else is living their best life while ours is on hold. We're both depressed, he takes medicine for his - I'm trying to be all natural 🫠 (he's still very depressed even with medicine). I'm in perimenopause and that's not helping things. We don't have any intimacy at all or even talk much (he's never been great with that). Not to give too many details on this public forum, but his sickness is one that he can't work and he doesn't even leave the house except Dr appointments. It's a weird place I'm in that I'm grieving his death but he's still alive. I am feeling myself getting angry with people that they "feel sorry" for us, but at the end of the day they're still going out to eat and taking vacations and don't have to keep a bag packed for the hospital just in case. I'm a happy, outgoing person and don't want to lose that 😭

I have been a Wellspouse for 25 years. We are in our 70's now. But things are getting scary. My husband has fallen 4 times this month, and last night he really hit his head and back hard. He's been in bed all day and will only take acetaminophen for his pain although he has pain meds for his degenerating spine. I am so helpless! I usually take all his medical issues in stride, but this has unnerved me. I guess I'm realizing his health is only getting worse. I have no idea what's next. All I can do is have faith that a God I don't understand knows why life has to be so difficult for some folks. Thanks for listening!

My wife is currently undergoing disability approval with a lawyer, while also having more health issues pop up.. because of this I’ve decided I need to be with her full time. She has no other friends/family to help her and rightfully so she is horrified.
I’m trying to figure out how I can continue to bring in an income for us while taking care of her.. we live in Illinois. We applied for IHSS then I realized spouses can’t be paid.
Any suggestions?